Hospice, What Is It?
Let's shed some light on a subject that's not really talked about.
So, losing a loved one sucks. A lot. I lost my father a little over a year ago, and my great grandmother the year before that, and her sister in between the two. The one thing they all had in common which I think it made it even more immensely difficult for me is that they were all in hospice. For those of you who are unfamiliar with it, hospice is essentially end of life care for those with terminal illnesses. Some people can be in hospice for months, but most of the time, it's a week or less.
When a loved one goes into hospice, they go through this whole spiel about how this will make them comfortable and easier to transition into, well, death. Then they give you this little blue booklet that basically tells you what it looks like to die. I read it first with my great-grandmother, and then again with my father.
I'm sure someone out there is thinking "Why the fuck would you read that?" And I'm telling you, it helps. As crazy as that sounds it really does help. It by no means makes the process easier, but at least you'll have some idea what to expect. And you'll be amazed at what you will learn from it.
The first thing that I read in that book shocked me. I mean, I was shook. It made death seem so incredibly text book, and made me realize that I should've expected this about a month and a half before they actually went in.
Now, I need to clarify. I was with my great-grandmother during the last few stages, the part of the book where it talks about days to hours before death. For my father, I had witnessed the entire process and didn't even know until two days before he had died.
One of the biggest things that struck me was the lack of social interaction and loss of appetite. My father was kind of a social butterfly. He was the head deacon of our church, and was there 2-3 days a week. He also led prison ministry where he'd go to Faribault, MN and give sermons to the prisoners. He was always up and doing something.
The same went for his food consumption. My father wasn't a large man by any means, but he had a huge appetite. I can't remember a time where he wasn't eating or snacking on something.
As I read through that section in the book, I reflected on his behavior over the past month. He was sleeping a lot more, which didn't seem out of the ordinary to me. As active as he was, he really enjoyed a good nap. And he was sick! It was obvious to me at the time that what he was doing was completely normal. His lack of appetite did strike me as a tad unusual, but again, being sick, I thought it was completely normal. The same thing happened with his social life. But of course, I had attributed all of it to him being ill. The worst part of all of that was finding out that yes, it was normal, but not because of his disease, but because his body was preparing to die.
The next biggest thing that caught me off guard was the surge. The book, the author refers to the surge as the part where the patient will all of a sudden has this burst of energy. In some cases, the patient will act as if they aren't at all sick. In others, they will be aggressive and lash out.
My great-grandmother's surge was an aggressive one. She was mean and hateful. She called my aunt a whore. My father was more like his old self. He didn't say a whole lot. He just seemed to have woken up and was grumpy. He asked us to help him get out of his bed and move him to the couch. And we did. He had some help from one of my brothers, but he made it to the couch, and went back to his "nap."
Many people will take this as a sign of their loved one getting better. I sure did. I had read in the book that this is again a normal portion of the process, and I knew it wouldn't last, but of course, I had to have some hope that maybe he could actually be getting better.
That thought was quickly shattered by one of his fits. I didn't recall the booklet talking a whole lot about what I had saw. My father went into these awful little fits where it seemed to resemble a seizure. His eyes rolled into the back of his head as he would heave and gasp for air. The first time it happened, we thought "This is it. He gonna die."
Unfortunately, that wasn't the case. I say it's unfortunate it because it happened at least another nine or ten times throughout the night. It was awful. It was the most horrendous thing that I have ever witnessed in my entire life. I probably called the hospice hotline six or seven times about it. They sent someone out telling us that he would probably be dead within the next 12 hours.
The fits didn't stop until around 8:00 am the next day. His body was finally at rest. He was just laying there, breathing, but the breathing was unsettling. In the book, they call it "fish out of water."
They take these shallow, heavy breaths, hold it briefly, and exhale quickly. This is what the final stage looks like. I was incredibly relieved. The worst part was over, but now, we had to wait. Just wait until he stopped breathing. This portion can take some people days to past through, for him, it was only hours.
I see this as a nightmare, because to me, it was. The written content above here documents the worst 13 hours of my life. Hospice is not a beautiful process. They seem to try and paint this picture that they'll go peacefully, and painlessly.
They tell you everything that happens to them, but they don't really seem to tell you what's going to happen to you. I hope and pray that no one ever has to go through this process, let alone multiple times. But in the event that one does, I hope that this will make it seem a little less scary.